"So How Did You Get That?": Experiences of Individuals Living with Hepatitis C Virus (HCV)

Abstract

Living with a chronic illness is challenging at both the individual and societal levels. How do individuals with Hepatitis C Virus (HCV), a culturally invisible disease, experience their illness? This dissertation examines the illness careers of 53 men and women with HCV through in-depth interviews. I explore how individuals experience their illness through an extension of the concept of biographical disruption. This concept is further developed by incorporating disclosure patterns of health status and experiences with stigmatization. This research addresses how people make sense of their illness on an individual level while still locating individuals within the larger social structure. Three main findings emerge from this study. First, individuals disclose their health status at various levels with some people practicing quite open disclosure and others maintaining a veil of secrecy. Whites disclose their HCV status more openly than do racial or ethnic minorities. Reasons for revealing or hiding their illness are couched in terms of concern for others or a concern for self. Second, not all persons with HCV believe that there is any stigma associated with the disease or have experienced any stigmatization. Again, race plays a role with Whites reporting more experiences with stigmatization. Individuals employ numerous coping mechanisms to deal with stigmatization. People with HCV do experience other reactions to disclosure besides stigmatization including social support from family, friends, and in the workplace. Third, persons with HCV make sense of having the disease through a variety of processes. Experiences with diagnosis are diverse including respondents' initial reactions. Knowledge about the disease is stratified along racial lines but not by social class or gender with Whites having more accurate information about HCV. Over half of the sample turned to HIV/AIDS discourse to give meaning to their illness because of the lack of available imagery on HCV. Persons conceptualize their illness in different fashions with some relying on their faith to cope. These findings underscore how race shapes the illness experience of persons with HCV and propose ways to eliminate further inequalities.